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playing the waiting game

hi all, just new here ive been lurking up till now thought id say hello. i was originally reffered to neuro as had 20 years of tight painful legs when walking and now using a wheelchair as cant get further than neighbours house before my legs get so tight and painful i cant move, id never even heard of ms anyhoo i wont bore yous with the other symptoms i can now connect. had mri and waiting onn results of lumber puncture so its a waiting game and i dont know what will come out of it but hopefully some sort of diagnosis or more importantly treatment x

For many years I have had various painful conditions, pains down my left hand side and in both legs/arms. I also experience severe vertigo and have been told I have symptoms that equate with bowel inflammation. These conditions are severe and distressing. I am also diabetic. Up till now no-one has been able to diagnose why this is happening, however, last week I saw a neurologist as some brain inflammation was spotted on my brain scan. I was told by the consultant that my symptoms point to MS and it was when he said that, that all the pieces of the puzzle fell into place. I have looked on the internet and found a number of sites that were helpful, but i am not able to ask anyone who has the condition how it affects them. This is why i am posting on this forum, it would be very nice to be able to speak to someone who is suffering from MS

Hi Kizzy, have you not been given any meds to help with the tightness in your legs? I wonder if baclofen would help. It is a common drug for that symptom.

20 years is a long chufffin` time to suffer hun.

pollx

i just sat and typed a message back to you and iris above you and its dissapeared lol, going out i will get back to you i didnt click on reply so probably posted a whole new post grr

im in the same boat as you iris flower its no fun i know and i hope you can get some answers soon or at least some releif and treatment, after my gp visit today where i couldnt even get an antibiotic and told to sit it out viral infection inflamed sore throat and sore eyes due to inflamed eyelids ive decided they can bugger off im not going back and just learn to live with it for the sake of my own sanity ps let me know how you get on x

no boudica just gababpentin and pregablin cant take them they make me feel horrible x

Give baclofen a go. Docs usually tell us to find our own comfortable dose with this, after initial trial. I found it good, but too much caused my falls.

Pollx

thanks but gp refused any muscle relaxants until a neurologists diagnosis with something i asked after reading about it online but so far its a no go im just fed up, can anyone of yous maybe explain what my result letter means pls x

Hello - I’m also new to this forum, but have had MS for a few years. I too had awful vertigo around 12 years ago and was surprised that this was connected to MS. It used to take ages to get an MS diagnoses, but I think it’s a bit quicker nowadays. It’ll be easier once you know what you’re dealing with, as then you’ll be able to get any necessary medication and support. Keep pressing for medical appointments.

hiya muddles, yea my appointments have been qiute quick i had my mri appt less than a week after seeing the neuro, i never knew about ms before going to see him then passed onto consultant at next appt im just waiting for results of lp and waiting for another lumber mri, hope yr doing well

Prior to my MS diagnoses I knew of and was friendly with quite a few folk with MS. Like you I didn’t really know much about MS and hardly suspected that I would have it. 3 MRI’s, blood tests and a lumbar puncture changed my life. At first it did consume me, but now I don’t let it rule my life. Whilst I had symptoms for quite a few years I feel I should mention that I was in my early 50’s when diagnosed, so my reaction may well have been different if I was diagnosed at a younger age. Obviously one starts to read up on MS once one gets a hint that this is what you might have. One of my friends has MS and on reading up I was so sad to learn she had progressive MS,whilst I was diagnosed with RRMS. This friend is in a wheel chair,has loads of probs and over the years I’ve seen her getting weaker. She still teaches art part time at a high school, she moves around the school on a scooter, she paints, she’s a mum to 3 kids (one still in high school), she follows a super strict diet, has faith, is sociable and MS is never the focus of her conversation. She hasn’t allowed MS to define her and I truly admire her. Whilst I know MS is different for everyone and we all react differently, I do try to follow my friends example and for me life goes on. I trust these thoughts will help you at a tough time in your life.

i did reply eaelier but its dissapeared i could be positive if i knew what was going on but atm im having to use wheelchair outdoors and having other symptoms but havent got an explanation therefore no treatment if i coulld get an explanation and some treatment then yea i could deffo be positive as at least i would know what i was dealing with :slight_smile: